Observations on life by a sleep deprived mom, writer, and amateur paparazzi of my neurodiverse ASD family.

Keenly aware you annoy me.

Kids interpret instructions too literally at times. Autistic kids take it to new levels. For instance, I use the refrain, “Use your words not your hands!” I did so over breakfast as the kids wrestled over a toy. In frustration over the disagreement, unable to voice his thoughts at that moment, Owen threw his arms to the air above and implored, “WORDS?!”

Yet another wasted trip to a doctor for answers.

Autism. Why does it have to be such a loaded word? One with unfortunate connotations and a controversial history. For some, a disease, a problem to be solved or cured. A justification to pour money into false science and fear mongering. Then there’s the many debates around the verbiage surrounding autism and ableism. The word “autism” to me means the label for what is misunderstood, or unusual to others, about our son.
How does an argument over the word “awareness” versus “acceptance” help those I know with autism or those that love them? Nadda, zilch, bupkis. Then the justifications that changing the slant of the conversation by choosing one word over the other signifies seeking a “cure” versus finding ways for those with autism to be accommodated and understood. All the while you have parents stumbling around afraid to ask questions lest they offend another parent. How is that helpful?

In my own experience, the diagnosis was a relief and the search for help has been torture. The real torment is trying to find help and services without being judged or falling prey to political debates. You know what I’ve learned since then? That even well-intentioned, well-informed people can be more annoying than the misinformed and that phone calls have become one of my top five pet peeves. They just lead to more phone calls and time wasted on people who annoy me. Wasted words that could have been shared more pleasurably speaking to my kids, myself, the cat…take your pick.

All of us are unique but the logic of an autistic child is other worldly, including my children. I feel like our son is visiting from a parallel dimension. He’s a gateway between two worlds and has a foot in either world but leans more into one side more than the other depending on the moment. He sees what we do not, feels what we are immune to, hears a different tune and plays to it without inhibition. It’s part of what makes him himself and I love him as a whole person. Not despite his autism, or because of it, just because I love him. To parcel out his personality into good or bad is to judge and invalidate him based simply on his behavior or someone else’s beliefs about him. Aware or accepting, or both, you better be kind to him.

You know why we shouldn’t have to argue over the use of “awareness” versus “acceptance”? Because people can choose to be aware but all of us should be accepting and if you don’t believe that then you’re another “a” word. Happy acceptance month. If only “acceptance” was a given and not allocated to certain days and months.